(DATE)
(1) COUNTY CHILD HEALTH NOTES
Promoting early identification and partnerships between families, primary health care providers & the community.
Distributed by: (2)
Contributors: Washington State Department of Health and UW – Center on Human Development & Disability
DOWN SYNDROME
Down syndrome is one of the most common genetic syndromes, occuring in one of 800 –1,000
live births. It is caused by triplicate material of chromosome 21. Down syndrome is associated
with:
 A phenotype of common physical features.
"We thought our lives
would change forever
the instant they told us
our baby had Down
syndrome. It is
something you never
forget, hearing news like
that.
Our doctor connected us
with Parent to Parent. It
really helped meeting
others who had kids with
Down syndrome. It
made the future not so
scary. I don’t know what
we would have done
without the support of
other parents."
Parents of a child with Down
syndrome


Mental retardation that may vary from mild to severe. There is no correlation identified
between number of physical features present at birth and degree of mental retardation.
Increased risk of: hearing loss, otitis media, congenital cardiac defects, eye disease and
refractive errors, orthodedic problems, gastrointestinal anomolies, thyroid disease, and
obstructive sleep apnea.
Things to Consider For Well-Child Vists:





Utilize the AAP Health Supervision Guidelines for Children with Down syndrome
(Pediatrics, 2001; 107: 442-449).
Plot height and weight using the Down syndrome growth chart (Pediatrics. 1988; 81:102110)
Refer infants and young children for early intervention services. Studies suggest that
appropriate early intervention may minimize developmental delay, and improve the child’s
social skill performance.
Perform developmental surveillance – use milestone checklist, office administered screening
tool, and/or parent questionnaire to screen communication, motor, early-problem solving, and
social skills at each well-child visit.
Support the family - Allow time for family support during each visit.



Discuss family support programs such as parent to parent support, Down syndrome
programs, and sibling support.
Assure that the family is enrolled in appropriate funding support programs such as
SSI and Washington State DDD services.
Review the early intervention or school program with the family and service
providers at least annually.
INTERNET RESOURCES
Healthcare Guidelines for Primary Care:
• AAP Down Syndrome Guidelines
• AAFP: Primary Care of Infants and Young Children with
Down Syndrome
• Down Syndrome Health Issues
• WA State Medical Home Website: Down Syndrome page
Family Resources:
• National Down Syndrome Society
• Down Syndrome WWW page
• Siegfried, M. Pueschel. A Parent’s Guide to Down
Syndrome: Toward a Brighter Future, 1990
• Kay Stray-Gunderson, ed. Babies with Down Syndrome: A
New Parents Guide. 2nd Ed. 1995
www.aap.org/policy/re0016.html
www.aafp.org/afp/990115ap/381.html
www.ds-health.com
www.medicalhome.org/diagnoses/dsyndrome.cfm
www.ndss.org
www.nas.com/downsyn
publisher: Paul H. Brookes Baltimore, MD
publisher: Woodbine House Bethesda MD
(3) COUNTY RESOURCES FOR DEVELOPMENTAL SCREENING AND ASSESSMENT

For children under age three:
Contact: (4)

For children age three and
older:
Contact: Local school district
District:
(5)
Phone
Fax
District:
Phone
Fax
SPECIAL NEEDS INFORMATION AND RESOURCES:

Local:
(6)

Regional:
Children's Hospital and Regional Medical Center
Health Professional Hotline
Parent Resource Line
(800) 293-2462
(866) 987-2500
Infant Toddler Early Intervention Program
http://www1.dshs.wa.gov/iteip
Parent to Parent Support Programs of Washington
(800) 821-5927
Washington State Fathers Network
(425) 747-4004 ext. 4286
www.fathersnetwork.org
Washington State Medical Home Website
www.medicalhome.org
WithinReach (formerly Healthy Mothers, Healthy Babies)
(for a listing of your county’s Lead FRC’s)
1-800-322-2588, 1-800-833-6388 TTD
www.withinreachwa.org
American Academy of Pediatrics
AAP Developmental and Behavioral Pediatrics
American Academy of Family Physicians
Family Voices (Links to national and state family support
networks)
www.aap.org
www.dbpeds.org
www.aafp.org
www.familyvoices.org
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National/
Internet:
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